Saturday, 30 December 2017

Changes and Hopes for 2018!

Good Morning All!
Not my image! Image found on Google.com

I want to start by saying that I hope everybody has had a wonderful Christmas and hope you're all looking forward to a great New Year! Our Christmas was fantastic, I spent a lovely morning and had lunch with my family and we then went over to Simon's family for the rest of the night, lunch as per was awesome and spending time with all of our loved ones was just perfect. Myself and Simon were completely and utterly spoiled and I can't thank our families and friends enough, we will have to treat them all in the new year.

I'm definitely looking forward to the New Year, I went out with Simon and his friend a few weeks ago and my mood was not positive; I was feeling really depressed and quite hopeless, I think Simon was too at that point to be honest. Both of us had been going through a very difficult period which was impaction on our relationship at the time, something Simon's friend said to us really hit home with me, I can't remember the exact words but he basically said that when you step back form the situation and find the things you like, use the knowledge about yourself in a productive way you can make 2018 the best year ever, it's ours to make basically. He is totally right as well and we just hadn't really looked at it through the lens he uses before. He's an awesome lad, can't say that enough. 
So, with that in mind I want to talk about New Years Resolutions, something I'm sure many many people will be akin this year. Thing is, I don't make resolutions because I don't like the idea of 'letting myself down' if I can't stick to them, but this year some changes really need to be made, therefore this year I'm making some changes, and some promises to myself, that I think will make my life better and make my 2018 as happy and healthy as possible. Here are some things that I'm hoping to accomplish this year.

Improve my health - I'm not the most unhealthy person alive but neither and I the healthiest I could be. There is little I can do about my POMC until the time is right and new treatments are available, new options given to us all; however, there is a lot I can do to improve other aspects of my health to make me happier and more able. I need to mix up my diet, although at the moment it is very restricted, I would like to speak to dieticians to see if I could add more nutritional meals into my diet or even more interesting ones, eating the same thing constantly can get boring. Physiotherapy is on the cards as well as I want to be able to stand for more than 5 minutes without pain coming on, posture is something that needs looking at as the curve in my spine impacts that a lot, I think physic would be a good thing for me even if it's not a cure but a help. Counselling to keep my mental health on track is something I also want to get into, there is absolutely nothing wrong with trying to keep your mind healthy, I still have battles with low self-esteem at times and that's something I'm hoping to overcome this year. In terms of health I also need to be much more forward in telling the doctors what I need instead of just agreeing with their course of treatment, that is a very important one for me. 

My book on how to live well the Danish way! Exciting read
Change my mentality - This is a big one actually and pretty much goes hand in hand with the counselling aspect of the above mentioned point. I really need to change my mentality around... well everything. A little fact about me, I let people take advantage of me all the time because I don't have the confidence to stand up and say no. I've put myself, and in some instances, Simon, in very awkward, difficult and uneasy situations due to my inability to say no. Something I need to take heed of is the fact that if somebody else chooses to do (or not do) something because I'm not then that decision isn't on me, everybody is responsible for their own actions and I want to work on my ability to not take everything to heart. I need to be kinder to myself, I often think I'm a terrible person, berating myself for the smallest of mistakes, I put too much pressure on myself at uni because of this. I'm human too and this is the year I want to accept myself completely, flaws and all. Sometimes I try far too hard to please other people and get upset at criticism but I also want to try and be myself more this year, if I don't want to do something I won't. I should get back to my knitting, cross stitch, back into my reading and such. I got a book for Christmas about the Danish way to be happy and I can't wait to read it! 

Spend more time with family - Time with loved ones is precious, all time is precious but it's even better in the company of those you love most. Unfortunately there are some people I'm often surrounded by that, for my own mental health, I am going to have to step away from, regardless of the nature of our relationship some people just are not good to be around. Constant arguments, belittling, lack of support and compassion is not the kind of attitude anybody needs to be around. Therefore, this year I will be spending my time with those who truly matter, those who are there for me and I for them, I've heard over and over that surrounding yourself with good people is the best possible thing you can do for yourself, 2018 will be the year I take that advice and test that theory. Simon's family are included in that as I love them as my own and always look forward to spending time with them as well. It also includes spending time with friends, these are the people who help you up no matter how far down you fall and those people are hard to find, keep them close I say!

Be more of a 'YES!' woman - I remember watching Jim Carey's 'Yes Man' movie years ago and as much as a lot if it was so cringey (and still hilarious to me) you've got to admit he was much happier when he started just saying yes to the little things he usually would have said no to. This year I want to be a yes woman, I want to say yes to more days out and going different places without worrying about the price of things or how many days I have left to do my essays... I always get them done at least 1 week in advance anyway. I also have plans to start this little promise to myself as I want to go to the Hancock Museum in Newcastle, I hate history but love the cavemen, dinosaur type history, so that would be fun. I also want to go to a couple of art galleries, more movie nights out, trips to weird and awesome places. Another side promise to go along with this is that I want to make a scrapbook, or at least take more pictures to keep these important memories alive.

More me time/Learn to step back - Finally, I think something that I have been meaning to do for a long, long time is take more time for me. I love Simon and he loves me but everybody in a live-in relationship needs their own time and we don't get a lot of it these days with uni, family, work and everything else going on. So, with that said I want to take more time for me and learn to step back from situations that I need to remove myself from. I have already thought of how I can do this, I am at my happiest when I am listening to my music, this year I had to invest in a new iPod Touch as a replacement for the best piece of technology ever created... the iPod Classic (screw you apple for discontinuing those!!), so I've bought myself lots of new albums and I am ready to go! I've packed my personal care boxes full of body butters, nice smellies, my craft box is full and I'm fully prepared to give myself some me time in whatever way I fancy!

So those are my little promises and hopes for 2018, and you know what? It doesn't matter which or how many of these promises I manage to fulfil because even one of these things will make my life a little better. I hope you all are looking forward to a brand new year! Thank you all so much for reading and please let me know what your promises/wishes.resolutions are for 2018!

See you soon guys! xo











Friday, 22 December 2017

Christmas in Our Household! A.K.A. I'm So Excited!!

Evening all!

This post is up slightly later then anticipated only because I've been getting the last few bits and bobs ready for Christmas, my gosh I am so so excited for Christmas!!

This post is pretty much going to be all about how our family does Christmas to be honest, it's the best time of the year for the whole family to be honest, we just love it so much.
Christmas has always been my favourite time of year because I absolutely thrive in cold weather, while everyone else goes around grumbling and muttering about how awful the weather is I am just completely in my element. Don't get me wrong I love Halloween and all the other holidays throughout the year but as soon as Halloween is over I put my Christmas tree up on November 1st, I still laugh when I remember Simon's reaction when we first got together and I put my tree up that day, he had slept at my house because we got home late from a Beamish Halloween event and he was partly loving the spirit and partly in disbelief that people do that so early haha! As you can see it looks like there has been an explosion in a Christmas factory looking at my Nana's living room and tree! Isn't is awesome?!
 

At school I had a friendship group who always called me Mrs. Claus, I loved that name, best thing I ever got called at school. 
Anywho, it's two days away from Christmas day and we are all in full Cheer mode in our house, because my birthday is so close to Christmas the Christmas celebrations don't usually start until the week before. On Monday I had my regular RVI appointment so not much happened until Wednesday really... Me and Simon were so bored sitting in the house and that's no good for any couple usually we get at each others throats if we are cooped up too long so we like to get out and about as much as we can, we decided to go for a small walk around Hardwick Park, a woodland area really close to where we live and honestly it was such a lovely day for it, BITTER cold and barely anyone around. Whenever we did meet people they always smiled and said good morning or Merry Christmas, that's what I love about this time of year, amid all of the rush and hustle and bustle and complaints about the same old songs playing on the radio, there is something underlying, some kind of kindness in people that just sing there any other time of the year. Christmas brings out the best and worst in people and it all depends on your outlook about which side of people you would rather see, I think at least... I might be talking rubbish but Christmas to me is just a happy time. 
Halfway around the walk I started to get pains like usual, my leg felt like the muscles were being for to shreds but on the surface my skin was going numb so I couldn't feel my leg at all, we ended up sitting down for about half an hour until I had some feeling then just doing very very short bursts of walking, what should've been a 30 minute walk turned into a two hour escapade, I ended up crying quite a bit, felt like begging to the clouds "please just make me normal!!" but what's the point? Onwards and upwards so we made the best of the situation, Simon managed to get some lovely pictures, one being of a very majestic looking Robin. 
After the walk we both went to meet a really old friend of mine, we have known each other since school and went for a starbucks, Leanne is such an awesome person honestly, our friendships has never changed even if we have lost touch before; I adore those kinds of friendships ad I'm hoping we can plan another catch up day as soon as possible. We ended up swapping each others presents and cards for Christmas and heading off home after a chin wag. 
Not much happened on Wednesday after that so we ended up watching Christmas TV shows like 'Friends' and 'South Park' episodes which was lovely. 
Over the last couple days I've been taking my nana shopping for Christmas food, the best part of Christmas, I love spending time with my nana she is such a strong and amazing woman and I'm blades to have her in the family to be honest, she's pretty hilarious too, whenever I ask her for directions you can guarantee her answer will be "oh... it was that last left turn" and we always end up laughing and finding somewhere to U turn haha! I'll be taking her shopping tomorrow as well to get the last little bits and finish up before the big day. 
On Christmas eve we tend to swap presents with friends and make sure everybody has been given their presents, I' hoping we can get out for another walk even if it's a really short walk this time, just so we can get out and in the fresh air. Usually, then I will help grandma tidy up the house as we always open our presents at her house and will be having dinner at my Mam's this year. After helping around the house I will get into the car and go an deliver last minute Christmas cards to friends and family in the village and we will go visiting after, this year because of we have lost a lot of close family over the past two years my uncle will be coming to visit us this year and my uncle Charlie is no longer with us. He was a truly fabulous (in every sense of the word) man. Instead of visiting everyone this year we will be heading to our local church as myself and Simon are practicing Catholics. I always love going to Church and don't have as much tie as I would like to attend regularly as I want. On getting back hope we will grab something light to eat and get a few christmas films on, hopefully this year we can watch 'A Christmas Carol' and '8 Crazy Nights' or 'Nightmare Before Christmas'... Ahhh there are too many to choose from! Then we will get to bed before 12am so we can sleep before Santa comes!!

On Christmas morning my Mam and Dad will wake us up around 6/6:30am because they're big kids and we will have our stockings at the end of the bed to rip into, then after taking an hour (or so it feels) to wake up Nana and Granda, my Dad heads downstairs and "checks if Santa has been", he always has. So, we get to run downstairs and get into opening the presents while everyone sits with a cup of tea or coffee, this usually takes two hours give or take. Then we will gather all the gifts together into our own little areas and call or text everybody to say thank you and wish them a merry christmas. Then the best bit... Christmas lunch!! We will be having lunch around 1/2 this year so not too late, usually after a big dinner  we all sit and watch a film until one of us falls asleep, usually my Granda. Since living with Simon it's been different though, Christmas is split between my family and his so we have Christmas evening ad night with his family, mainly because my Mam is too poorly she can't stay awake too long and gets tired very easily so we get what time with her that we can to be honest. It's always a true joy to see Simon's family as they're all fantastic people, I really do love them as my own. It's a 35 minute drive to Simon's house so we will blast the Christmas tunes as we go and do the same on the way home, usually a little quieter haha. 
When we get home you can bet your last penny we will watch a dvd and fall asleep as we watch. Perfect. 
Boxing day is usually us looking through our gifts and spending the day with families, eating still more food (if you can't eat what a little worse than usual at Christmas when can you?) and just relaxing really. So, that is Christmas in the Simpson/Savage/Steel household.
I'd love to know how everyone else is doing Christmas this year? What are your traditions? 
Whatever you do and wherever you are I hope you have a wonderful Christmas!!

Bye for now,
Katy. xo
















Tuesday, 19 December 2017

Update and Apology

Morning everybody,

Before I start I really want to apologise for being absent for so long, I'm very disappointed in myself for not making more time for blogging but family and personal life problems have been difficult to cope with. Simon is struggling with a few things and I'm trying to support him whilst working on our relationship, dealing with the huge amount of essays and a presentation at uni, as per also trying to manage my health. So, in effect, I'm not trying to give excuses just explain why I've been gone for so long, and I'm genuinely very sorry. 

Anyway, on to the crux of the matter, I would like to give everybody an update on, well everything basically because so much has gone on since my last post! In terms of university things are going pretty good actually out of the 3 assessments we have completed this year I (and my group for one of the assessments) managed to get firsts in two of them which is absolutely amazing and well done to everyone else who submitted them all! I'm helping out friends with uni work and trying to work together, a study busy kinda set up and that's pretty fun too to be honest, I've always thought that teaching others is one of the best ways to consolidate your own learning so as I'm helping others I'm learning myself. 
We have just managed to finish our first semester of year 2, despite having 5500 words to write for essays over Christmas I am definitely looking forward to the break because we don't go back to uni until late January 2018! Actually, speaking of essays once I've finished this post I'll be starting another essay which I'm hoping to finish on Wednesday night or Thursday, probably Thursday because I'll get some absolute quiet with Simon and everybody else being out of the house and I tend to focus better when I'm alone; total loner me ha!

Oh Christmas as well!!!!! I'm crazy for Christmas it's the most wonderful time of the year (ha see what I did there) and I've had everybody's presents bought and wrapped since October so definitely ready to go now, as you can see from the picture as well we have got our christmas tree up and decorated and spent a lovely night a few weeks ago watching Home Alone. Oh also it was my birthday on the 14th of December and I turned 22! one of my oldest and most lovely friends managed to get Taylor Swift's 22 song stuck in my head ha, thanks Leanne, I can't wait to meet up with her tomorrow we never get enough time to see one another being so busy. I was totally spoiled for my birthday and Simon had booked us a weekend away in a log cabin with a hot tub... pretty amazing and I'd never been in a hot tub, by the end of the weekend I didn't want to leave the hot tub either, a nice glass of wine in your hand and bubbles was absolutely perfect! The picture to the right is the view we woke up to on Sunday and it was absolutely beautiful. Honestly, though, essays or not I am so excited for Christmas this year, I'm hoping to get up a post soon as possible, probably Thursday evening all about Christmas traditions in the Savage/Simpson home. 
 



Things with my health are kind of progressing weirdly, random things are going on in my body and it feels like an uphill battle to get some support. If you can remember I told you guys that doctors were wanting to put me on Liraglutide or Saxenda/Victoza as it might also be known, I did a whole post on it and what my concerns about it are, obviously there is a black box warning on the drug as it can cause different kinds of cancer or pancreatitis, this was a massive worry despite people telling me otherwise because there is a clear history of cancer in my family anyway, my mam, grandma, and great grandma have all had a kind of cancer, my cancer levels are raises slightly anyway so in my opinion, to put me on a drug for weight loss that I might not react to and the average weight loss for a normal person is alb every 3 weeks, this would be too risky a decision for me. So, yesterday when I attended my RVI appointment I basically putty foot down and refused that option for treatment, as impossible as it might be I would rather use my last breath to try and improve my health in terms of lifestyle changes rather than do it via a dangerous, in my opinion, drug. 
At the RVI yesterday the doctor has told me that I need an emergency gynaecology appointment because I've had issues with bleeding between periods and one major issue involving a lot of pain and bleeding, the doctor seems quite worried about that. I'm not too worried about it to be honest mainly because I have always had issues with my periods, and especially with endometriosis and PCOS, sometimes weird things can happen but at least it's best to get things sorted, I remember having a phone call with my GP surgery about the bleeding between periods and I had explained all my issues and the doctor on the other end of the phone told me and I do quote "oh it will be nothing" which is an alarming response from a GP but I have to admit my surgery is absolutely appalling. It's in this instance that I'm more thankful for my consultants and specialists at the RVI, they do such amazing work and I'm happy to be one of their patients to be honest. 
Oh I am also being referred to a sleep apnoea clinic... Apparently I snore haha! That'll be interesting to say the least :)

To be honest that's all I have been up to recently it's been pretty hectic trying to get ready for Christmas and going away and essays, presentations, health issues, family arguments and a whole lot of other stuff!!! Still I'm overjoyed to be back and absolutely can't wait to get bak to blogging regularly!
Thanks to all you guys who stayed with me and keep checking the blog regularly, I'm hoping to have exciting news soon as well as I may be arranging a call with someone from Rhythm, the company developing the drug Setmelanotide! So keep your eyes and ears open for that post coming soon hopefully :)

Have a wonderful day everybody!
Thanks for reading xxx

Sunday, 15 October 2017

Love & Our Bodies - For Plus Size Peeps!

Good evening all!
Image found on google, taken from general
pinterest thread

I'm sorry about the short absence but university has been absolutely crazy, there were a few hiccups with trying to get all the modules sorted for people and so far we have 4 assignments and presentations and things to do so it has been mad here. In my last post I mentioned that my mental health had not been the best it could be, I think I made that apparent in the way I was writing which shocked me when I re-read it once I began to feel stronger mentally, that's the first time I've ever looked at my feelings on paper and even in the tone of the writing it scared me, I've therefore made the decision to seek help from an organisation referred to me by the doctor, hopefully it won't take too long and I will keep you updated on that as well.

Today's post to get back to it is all about dating an relationships when you are a plus size person, be it male or female, LGBTQIA+, heterosexual, black, white, tall, short and everybody inbetween. I've chosen this topic because it's been 2 and a half years of being with Simon and almost a year of being engaged and thinking back to how I was feeling before I met him I was miserable and would've loved someone to tell me that everything would work out and to chill out. Anywho, on to the bones of the matter.

Before meeting Simon I was extremely bitter, I'd had a number of awful experiences with men and some very heartbreaking scenarios with other people. I hated couples, anything to do with sex, imtimacy and desire, I was jealous of friends and caused arguments because of it, a lot of that I regret now but the issue ran deeply for me because I craved it. All of it. As a teenager I was painfully aware that society did not promote my body type, never mind as ideas beauty, but as beautiful at all, in fact a lot of media, social media and average Joe's on the street made it clear that my body type was to be avoided, nobody would want a fat lass. That's what the kids at school told me and after hearing something so many times you begin to believe it. This kind of attitude leads to low self-esteem, body image issues, a lack of confidence and internalised ideas about beauty, this ideology of of the perfect body is extremely harmful yet permeates almost every aspect of our lives. If you're a bigger person you're automatically not good enough or so society tells you, ever heard someone say "you're pretty/handsome for a big girl\boy" yeah that phrase right there, although it may be meant in the best of intentions it still implies that you're being compared to the ideal standard of beauty. The first thing I've learned is that you absolutely need to get that concept out of your head, there will always be people telling you that you're not good enough for whatever reason, but honestly, why take something as menial into account as looks? Beauty didn't help you get to where you are now, having lots of compliments and men/women falling at your feet didn't help you become the person you are. Your experiences and thoughts, your family and friends, opinions and beliefs are the things that shape you, to some your looks will be but a bonus. The human body is a miracle and quite frankly to base an opinion on something purely on aesthetics alone is shallow, you wouldn't base your opinion of someone else purely on how they look so why do it to yourself? 

With over 8 billion people on the planet is it not irrational to believe that nobody would find you attractive, nor would they find anything at all about you attractive or want to be with you? You might be funny, academic, athletic, artistic, bubbly, quirky, introvert or outgoing and there will be somebody in this world, in your country, possibly even in your home town who will like at lest one of those traits, someone will love your  messy hair, your chubby cheeks, your belly rolls. Someone will crave to have your bingo wings wrapped around them at night keeping them extra warm or big thighs resting on them. Somebody desperately wants a girl who isn't "media beautiful" a woman who carries a few extra or a whole load of extra pounds. Those people out there will be feeling the same as you, that because what they like and find attractive isn't usually what is expected that something about them is wrong or faulty and it's not. The phrase "whatever floats your boat" is never more appropriate. 
However, before you can start getting yourself out on the dating scene or even just out on the scene you need to remember that the image of beauty is given to us by other people, not us. Overweight and obese people are just that, they are people who deserve and crave love and affection, there are obese people out there who unbelievably satisfying love lives, obese people who have lonely love lives, people who are in extremely happy and very unhappy relationships, just like there are people of average and petite sizes who have amazing sex lives and relationships and others who want to improve theirs. Sometimes you just have to deal with the wait and hang in there until somebody comes along, it may not be the love of your life, or it could be, but hell! You'll have fun along the way as long as you keep reminding yourself that you're a beautiful, miraculous human being who deserves love just as much as any other beautiful, miraculous human being. 

If you are a person who suffers from a genetic obesity disorder there is something else I feel I need to tell you before I continue, never EVER feel like you have to justify yourself!! Do you ever hear a slimmer individual saying "oh I'm sorry I'm so small it's genetic"? No. Unless you feel like you need to let a potential partner know the ins and outs of your condition or unless you're talking to your doctor/someone you're comfortable around you do not have to discuss it or give reasons for your size. This is very important, I remember sending Simon a text when we first started talking, a missive text outlining the fact that I have some kind of condition that makes me fat and if he wants to leave me he is welcome to, he didn't obviously and he found it astounding that I would feel the need to disclose that and his reply was "I don't care that you're a big bodied woman, I like you and I don't want to ever lose your friendship". 

Another point I have to make is that once you do find someone, a relationship, friend which benefits or even if you find that you've started to love yourself then you need to just enjoy that time. Just enjoy being happy and loved, desired and appreciated (hopefully appreciated, if not kick that lady/dude to the kerb because you deserve better). Don't waste time looking at other women or men and comparing yourself to them, I've cried so many tears thinking that Simon was only with me because he felt he was in too deep, that he grew to love my body and didn't actually want me. Things like that can ruin your relationship and send you back down into a spiral or self loathing and degradation, which is not what you need. Learn to accept the fact that your partner is with you because they love you, because they desire you and because you are the one that they want (oh oh oh honey!), sorry little Grease humour for you there. Even if you don't believe it keep telling yourself that and over time, if you stay in a long term relationship then you'll begin to believe it, just like you believed the negative comments you can believe the positive. 

I would also say that you should be aware that obesity and "fatness" is viewed as a fetish for some. The fact that you are a 'fat person' may add to the attraction for them or some other people may be attracted to you purely because of your weight. If you are okay with that then great! Please remember you aren't just an object to be used or drooled over, you still have feelings and don't want to be used (unless that's your thing than you go!). Some people are feeders who get erotic pleasure from feeding their partners so they gain more weight, people who are pushy and insist that you must eat or you would "do this is you really love me" are not good for you, particularly those who have a genetic obesity disorder and you might feel these people are worth avoiding, however an extremely important note is that not all people interested in feeding take it far, the majority of feeders and fat fetishists will take into consideration their partners feelings and thoughts on the matter just as any loving partner would so please don't tar everybody with the same brush as all people are individual. 

So, for tonight I think that is it and I really appreciate it if you've managed to make it to them end because it's been really long winded and I really hope nothing in here has offended anybody, the aim was to help you start thinking differently about your body and yourself as a loveable being. 

See you next time! 
Xo.




Sunday, 1 October 2017

Quick Update: University and Health

Afternoon all,

This post is going to be very short as at the moment I'm not feeling great at all, I'll be posting an update all about university and my health for the moment as I don't want to leave posting while I'm ill but i also don't have the energy either mentally or physically to write a long post on a particular topic. Apologies all around for the lack of posting however it's not unexpected, last Monday (the 25th I believe) I started back at university for year 2! Very exciting time but the workload is as I expected, heavier and coming quicker than year 1 did, from what I am aware I have at least 3 assignments due in before end of semester 1 in December so I'll be needing to get started with those as soon as possible, my lecturers are fab and the topics seem very interesting. This year I'm studying Medicalisation, Sex, families and personal lives, social policy, industrial society, quantitative research and a placement module. So far I think I've managed to pick where I want to do my placement and what research project I'll be wanting to base it around so yey!
Our university has recently started using the VLE Canvas to put all of our modules on so we can access them easily from home, as of now I can only access 2 out of this semesters 4 modules so for two of my lessons i can't do my reading, can't do the seminar tasks and have no idea how or what deadline assignment dates there are, obviously this is stressing me out a lot, I've actually cried so much over this as it's massively impacting my anxiety, I mean I don't feel good enough to be in second year but how am I supposed to be doing well if I can't do the tasks assigned to me? Anyway, I've spoken to lots of people about this and nobody has managed to sort anything yet but hopefully this coming week something can get done. 
Other than that in terms of university my best friend has started at my uni as well which I'm really happy about as we used to spend lots of time together at college but not as much since we went to separate universities last year. Earlier in the week we went to a student shopping night in the Gateshead metro centre which was very fun and we got lots of bargains, there is another student shopping night coming up soon so if i'm up for it we will head down. We also went to see Simon and my friend's band Deep.Sleep play at the Independent in Sunderland which was amazing! I highly recommend checking out Soho by Deep.Sleep, they are great. The night out in Sunderland resulted in far far too much to drink after blocking out a horrible day on Friday, some people at university were not very nice to me and it's knocked my confidence and my mental health has suffered because if it but hey ho alcohol usually seems like a good idea at the time but never is. I ended up in a state apparently saying Hi to everyone who passed and insisting it was Thursday and telling people Ja is German for yes, I'm not completely sure I trust the stories my friends tell me though. Still recovering from that one...

As I said at the beginning of the post my health hasn't been too great, I'm suffering from insomnia, my asthma is getting a little worse at the moment and unfortunately I've got a skin condition called Acanthosis Nigrigans resulting from insulin resistance, earlier this year the skin started to dry out and cracked, recently it's been splitting and bleeding a bit and because i hate to bother the doctors with my problems I don't go so I tried to deal with it myself, now I'm left with a small infected hole in my abdomen that is extremely painful and making me feel very ill, it mean's I can't put a bra on properly, tops rubbing against surrounding area of skin causes sickening pain, Simon is with me almost every day at uni as I can't cope standing up, the weight of my stomach is pulling the skin down even more and tearing it more too. My endometreosis pains and a terrible matters are not helping at all either, I think I've had less than 10 hours sleep in about 9 days. Comments at university from people have obviously had an impact on my mental health which is probably apparent from my writing, I'm just not feeling up to doing anything at all and I'm beginning to feel as though there's no point in, well anything. I know it'll pass, or at least I hope it will but the quicker that day comes the better, I hate feeling so hopeless, useless and unloved. Thoughts that I haven't had for years and years, since school are not far from my mind at the moment, a lot of people say they think I'm always happy and jovial, I'm really not, I feel like I get on everybody's nerves, that nobody wants me or I'm not good enough to do anything, I don't feel worthy of anybody or anything at the moment.
To anybody out there who is feeling the same try and talk to someone if you can, find an outlet for the pain where possible, in art or music or writing, whatever you do don't let yourself feel like this longer than necessary. It sucks. 
So, to end with I'll apologise once again for taking up your time and not posting much, I'll probably be posting much less frequently as university really kicks in but I will remain active fairly often on Facebook, twitter, Instagram and this is definitely not me signing off blogging, you're not getting rid of me that easily. 

Thanks for coming back,
Katy. xo













Sunday, 24 September 2017

Liraglutide: Information and Concerns - The POMC Series

Hello again everybody, 
Stock image from Google.com

I would just like to apologise for the ridiculously late post, there's been so much going on this week it's been mad. I had a second RVI appointment within a month which is very rare for me as I usually get seen twice a year, this was to discuss the drug that I'll be talking about today. It's gotten around to that time of the month again and I'm not going to lie I'm in so much pain I can barely get out of bed and it sucks, other than that I have a skin condition called Acanthosis Nigricans (AN for short) which you only get if you're insulin resistant, the AN for me is on my neck and my upper abdomen directly below my breasts and the skin has dried out and split and resulted in an infection. University is coming up and I've been stationary shopping and preparing myself so, like I say, it's been pretty hectic. 
However, I am back now and today's post will be looking at a possible "treatment" for need of a better word, for POMC, now it's important to note that this drug is absolutely not a cure or a treatment for POMC but I couldn't think of a better word of it at the moment, management I suppose would be a better description actually, but for now I shall get into the post. 

When I was in York taking the call from Professor Farooqi she suggested that because of my rapid weight gain and lifestyle and diet she was concerned about me as a 5 stone weight gain in 9 months is really not good by anybody's standards, she suggested that while I am waiting to be eligible for the Setmelanotide trials (still not eligible at the moment and unsure of when this will be) I should try  another drug called Liraglutide. To be honest her tone of voice when she said "have you ever been offered Liraglutide before?" wasn't something that filled me with hope. You know when someone says something and you know that they know there is a reason you've never been told something like that? Yeah, that's the feeling I got. 
She told me about it, explained that it seems to have worked for people with POMC before and it might be worth giving it a go, obviously I got my hopes right up once again (5th time lucky eh?) and I was so excited to bring my RVI appointment forward to get right on this drug. Before I rushed into anything I decided I would do a bit of research of my own so I wasn't going into the appointment without knowledge, here is what I found. 

Liraglutide also known as Saxenda or Victoza is a drug that was initially developed to be used by those with moderate to severe diabetes and is in the same class as a drug named Byetta, it is derivative of a hormone called GLP-1 which basically stimulates insulin secretion and expands insulin making beta cells in the pancreas. In the beginning the main point of the drug was to drastically cut blood sugar levels and reduce weight in people with diabetes, however after some development the drug is now able to "work on" the MC4R reception, usually faulty in those with POMC which control weight gain and regulation. It was only prescribed for type 2 diabetes until this point, it has since been prescribed to people with POMC and positive results have been seen. Find more information about the drug in general here. The drug itself is very new and a lot of doctors I have spoken t in the last several weeks know very little about it other than the basics. 

Now, obviously I am being given this for weight management as I am not diabetic but I am insulin resistant, those being given this drug for diabetes are given a "normal" dose of the drug usually 1.8mg however people using it purely for weight management are given a DOUBLE dose. Right now, in my head the drug sounds amazing! i can't wait to try it and I'm 100% sure it'll do me some good. However, I also found online that if you have previously been on Metformin, another drug to regulate insulin, and have been intolerant of that, which I was while taking it, you may have an intolerance to Liraglutide, something which dampened my hopes slightly. I was still willing to try the drug though, inroder for the drug to be administered it is one injection each day in the upper arm, thigh or lower abdomen. I would also not be allowed to drink alcohol whatsoever as Liraglutide and alcohol mixed has serious side effects such as increased heartbeat and death. 

Here is where the concerns come in. As I was researching about the drug, as you do, I searched possible side effects and I was so shocked, I will write a list of the possible side effects of Liraglutide in a moment however, the things that caught my eye first is that the FDA, the organisation that approves or disproves drugs has put a back box warning on this drug, meaning that the side effects can in reality cause extremely serious conditions or death resulting from the fuse of the drug. This scared me right away, for obvious reasons, nobody wants to think that a drug that could help them might kill them or cause serious side effects, but because I've taken drugs before that have said side effects could be fatal e.g. Metronidazole antibiotic with alcohol can be fatal, I thought that maybe it was an overreaction. Here is a full list of side effects of Liraglutide:
  • Nausea
  • Vomiting
  • Diarrhoea 
  • Constipation
  • Upper respiratory tract infection
  •  Intestinal and digestive tract problems
  • Headaches/migraines
  • Sinusitis
  • Dizziness
  • Back pain
  • Flu-like symptoms
  • Injection site reactions
  • Bloating
  • Loss of appetite
  • Fatigue
These shown above are common side effects. Less common side effects include:
  • Shortness of breath
  • Weight gain
  • Horse voice
  • Lump in the throat
  • Throat swelling
  • Easy bruising or bleeding
  • Infections
  • Increased thirst
  • Palpitations/Arrhythmia
  • Less frequent urination
The final side effects as listed below are the most serious kind of effects resulting from the use of Liraglutide:
  • Pancreatitis
  • Pancreatic cancer
  • Thyroid cancer
  • Kidney or liver problems resulting in the need for dialysis
  • Death
Up until recently thyroid cancer had only been reported in rats, however humans are now presenting with it more frequently than before, I have decided that I am not going to include any statistics about the drug i.e. how many people have been diagnosed with what side effect because honestly there is so much contradicting evidence online, one report said 19% of patients presented with pancreatic cancer, another said only 1-3% of patients presented some kind of cancer after treatment. One report said people using it for weight loss have lost up to 10 stone and another said the best weight loss seen on Saxenda was only 19lbs in 56 weeks. For me the information is far too jumbled, mixed and contradictory, so until I can properly find out about the real statistics I will not post anything that may not be accurate, up-to-date or correct. It is also important to note that earlier I mentioned that those using Saxenda for weight loss purposes will receive a double dose, these side effects are laid out for those receiving a single dose, therefore it is to be assumed that side effects are more likely to occur when taking double dose of 3mg (according to my doctor at the RVI).

It is pretty obvious to me that this drug is extremely serious and is nothing to be taken lightly, the side effects could end up killing somebody taking it, I have a history of cancer in my family and I'm honestly not sure what to do, if I take it an react badly how many doses before I develop a cancer? Pancreatitis? How long before you see results? Would I need to take a leaf of absence from university? I of I wouldn't be able to work or afford the costs of getting to my hospital appointments as I cannot rely on family to drive me. I'm scared for my health as I cannot afford to gain anymore weight, I'm scared I'll never get to spend my life with Simon and my family, enjoy my time with friends and work in a job I love. I'm scared that my only management option at the moment could be the thing that kills me ultimately. I don't know if I should risk it or not and these are the times I want someone to tell me what to do. I've watched Simon cry because he's scared of losing me to the drug, my condition and such, I've watched my Mam and Nana cry because they can't help me. My head is in bits everyday about this. 

I don't know what to do at the moment but I promised at the beginning of this blog I would keep you all up to date and be as honest as possible about my feelings and how any treatments affect me, I hope you keep reading and please if you get offered this drug for whatever reason think very carefully before jumping right in. 
Thanks for reading and bye for now. 
XO




















Sunday, 17 September 2017

Exercise tips and Tricks - The POMC Series

Hello everybody!

Happy Sunday once again and I hope you've had an amazing week. Things have been absolutely maid here as Simon started back at University on Monday and I'll be getting ready to carry out more buddy duties this week, hospital appointment on Monday and dentist on Wednesday, feels like things are non-stop to be honest. Well, it means I'm not bored ha!
Anyway, I know I have been pretty delayed in posting recently but what with York and uni I've had a few post scheduling mishaps, mainly because one post that should be coming soon about a possible POMC "treatment" for want of a better word, will mean I'll need to do a massive amount of research on it and a lot of the information online I'm finding quite inaccessible so I'm relying on my doctor at the RVI to tell me a little bit more tomorrow. Obviously there's a post going up today about exercise tips and tricks that I've learned over the years, this one will include information on the best kinds of exercise I've found really helpful and what you can do to make the exercising process easier if you've got a genetic obesity condition. So, without further ado lets get on with it!

Exercising for anybody who is obese can be a difficult and emotional thing, I know a fair few obese people who simply don't want to exercise partly because they are scared of failing in terms of weight loss and partly because if they were to go to some local gyms in my area they are likely to get abuse shouted at them, which I always find infuriating... Why discourage somebody from going to the gym to improve their health when that is what a gym is for?! However, for people with a genetic obesity disease often they can put far too much pressure on themselves to work harder and lose the weight which as I've mentioned in many previous posts, with certain genetic obesity conditions it doesn't matter how much exercise you do the weight just won't drop off like the average person, so this can result in these people injuring themselves or putting too much stress on their bodies. I mean I'm not an exception I've spent hours doing stupid exercises trying to 'drop the belly fat' and lose 4 stones in a month' with crunches and such but it never works. 

Eventually when I got to 18 I realised that because of my disabilities the exercises that I was trying to do were harming my body and making me worser overall, I was trying to exercise to lose the weight rather than to be healthy and that was when I knew I had to change my mindset. The thing is if you exercise to lose weight you're not looking at the big picture, you're only looking at the outside and surface of your body, if you start to think that the reason you're exercising is to get healthier, to be more flexible and fit then you can open your mind to different exercise and routines that are out there and develop something particularly appropriate for you and your body. Getting fit on the inside might help the outside but in all honestly being overweight doesn't mean you're unhealthy, I have friends who cannot walk up the stairs without becoming breathless that are smaller than average sizes and have no medical problems like asthma, then I have obese friends who can walk a mile easily and not break a big sweat. 

I'm going to make a list now of things that I did once I had a change in outlook towards exercise, hopefully it will give some insight into how I managed to develop and exercise routine that is appropriate for me. 
  • I wrote down what I was looking for with exercise, I wasn't looking to lose lots of weight just to become fitter and healthier.
  • I did a lot of research on what kinds of exercises fit the criteria of what I wanted. Happily I found that Yoga was something that would improve my flexibility, muscle tone and wasn't too strenuous for my body. 
  • I took up Yoga and took classes once every week, I started to see a small improvement in areas such as better sleep, my body didn't feel as tense which was a much needed improvement. Yoga has now become part of my daily routine as have some particular stretches; I don't want to do too much exercise as it is extremely painful for my legs and back when I over do it but I do enough to maintain the level of health I have now so my disabilities don't get any worse. 
  • I made small lifestyle changes, years ago, rather than parking in the closest bays to shops I would park as far away as I could so i would have to walk father which for a time genuinely did help me, however since my weight gain has not levelled out and I have put more on I am not able to do that anymore, walking in limited for me however I would highly recumbent it for those of you who are able to. 
  • Swimming was also a wonderful exercise for me as it tightened up muscles in my body around the stomach area making me feel better about myself, however swimming is also great as you can use it to relax your muscles and just gently bob along! No exercise has to be very exerting as I mentioned. 
  • Due to a faulty hypothalamus I overheat and dehydrate extremely quickly so I always make sure I am hydrated and I ensure I take all medication with me such as my inhalers, my pain medication and I make sure I either exercise with someone else or I take my phone so if anything goes wrong I have a way of contacting people to get help. 
I would also recommend that before you exercise, particularly if you have a genetic obesity disorder that you go to your doctor and find out if there is any support from professionals or practitioners who could help you develop your own exercise routine, sometimes if you do it alone you may be a little over enthusiastic and end up damaging yourself. Always remember as well when you are trying to get yourself into exercise, for whatever reason, you won't see results straight away. A cliché as it sounds Rome wasn't built in a day and the fact that you are trying at all is an achievement you should be proud of.
Thank you all for reading and hopefully get the next post out within the next few days!

Have a wonderful Sunday, bye for now!
Xo
















Thursday, 14 September 2017

My Diet with POMC - The POMC Series

Hello there everybody!

How is everybody today? Hope all is well. Today's post in The POMC Series is all about my diet and how I cope with the hyperphagia caused by POMC deficiency disorder. I've always been very quiet and conscious of my diet but recently I've realised that my diet is actually a lot better than I thought. This post is not meaning to be bragging rights at all, like "oh my diet is so much better than yours" because the fact is it's not better than anybody's my diet is mine because this works well for me, I'm not always excessively hungry every second of the day nor do I skip or miss meals. 
I've heard from discussions recently that some people with POMC tend to keep an extremely low calorie diet and that seems to be going alright for some people and kudos to you if you've found a diet that seems to fit you and your body or needs because that's not an easy thing to do whatsoever, I mean take your average person, you try and find a diet that is satisfying, healthy and gives you all the nutrients you need at 1,000 calories or even much less in some circumstances... it's an exceptionally difficult thing to do, so well done! 
This post is also not going to be a complete run down of every single tiny thing I eat and drink each day because... well that would just be boring for me to write and probably for you to read, however if you would like me to do something like that in the future contact me privately and I shall look into putting something like that together to post. 

Anyway, I shall get on with the post right now. Overall, I've been to countless dieticians, exercise specialists and such, I've spoken to at least 5 different endocrine specialists who deal with my POMC from the RVI, my main doctors and nurses form Cambridge and each doctor and nurse has given me a different answer (with obvious similarities in the case of the specialists) to the question: "Which diet is best for me?"
Over the years I've tried many diets from carb-free, low fat, vegetarian, vegan and gluten free but none worked. Obviously, a dietician will tell me low fat, low sugar, low everything pretty much with a very low calorie intake, however doctors have told me (those from Cambridge and the RVI) that if I can maintain an exercise regimen with roughly equal output to my intake of calories and energy I should be able to manage my weight slightly easier, although it'll still have little effect on weight gain as I've been told with POMC it's extremely difficult to lose and much too easy to gain weight as the body retains as much energy from food as possible. Therefore from all the information I've gathered I've managed to set up a diet of roughly 1,200 calories per day, I've also recently been made aware that a high protein diet, the right kind of protein that is, can help in some circumstances with feeling hungry so often, I was recommended that snacks like nuts and Skyr yoghurt which is high in protein and very low in fat are snacks that may help. 

However, in terms of breakfasts I am, as I've said before unable to eat bread, it's just something about the texture and taste that makes me feel sick so I don't eat much of that whatsoever. I also struggle to eat on a morning at the best of times so breakfasts for me tent to be things such as homemade fruit smoothies and cereals like those high in fibre such as bran and oaty cereals, this allows me to get my fibre as well as getting fruit and natural sugars, my grandfather is friends with a man who often gives us fresh fruit and veg that he grows which is much nicer than supermarket produce, so it's very much homegrown stuff in the smoothies, skimmed or almond milk that kind of thing. Very tasty and surprisingly filling. If you make a larger one as well you could always take that with you to school, uni or work and make it last throughout the day. Stops me snacking at least. 
Again lunches tend to be kept very low in fat, small homemade pasta pots, soups, rice boxes usually keep me going, I love vegetables so grilled veg couscous is one of my favourite things, I usually have some kind of desert to go along with it and I enjoy making fruit boxes so I'll just make a mini fruit salad with different types of fruit or a small pot of mixed seeds and low fat vegan chocolate mixed in, although that one is a treat as I love seeds and chocolate!
Snacks tend to include a lot of nuts and seeds as I mentioned, sometimes I'll just buy a bag of carrots and snack on those until I'm satisfied, more yoghurt or crunching ice cubes are pretty much all I do for snacks.
Dinners for me are often much more protein based with fish playing a big part, definitely a fan of omega 3 over here ha! I enjoy experimenting with spices as does Simon so I'm quite happy to try different kinds of meats, vegetables and so on, usually dinner times are just a concoction of things we have thrown together (I make a mean shredded chicken salad as well!). It's really important for me that I keep an extremely low fat, low sugar and salt diet, protein is higher on my priority list than anything else, usually it's meat I crave anyway but honestly I do manage to stay under 1100 calories almost all of the time. Sometimes I go out to eat but that I on occasion every now and then, never a regular occurrence unless it needs to be as I tend to make my own lunches so I know exactly what is going into by body. When I do go out I love things like Japanese food so Nudo and YO! Sushi are two of my favourites and a lot of things on YO! Sushi also have the calories and nutritional value next to them on the menu so you know exactly what you can get and how it'll all add up at the end of the night. Most of the time I avoid things that are greasy or fast food because I know it'll make me feel sick as well as not do anything for my weight gain. 
in terms of drinks I only drink fizzy drinks they are now a no-go, I mainly rink water and flavoured water, always still. 

I've heard people many times over the years claim that food is the enemy with POMC warriors and that's all well and good if that is how you like to view it but in my personal opinion that's not how I ever want to view my condition. I see my body as doing me a favour... go with me for a sec. See, my body stores as much energy as it can because it doesn't work properly, therefore it's wires are crossed and thinks that I'm going to starve if I don't eat or get hungry a lot of the time (now I know this is the incorrect way of thinking about it but it helps me understand myself a bit better). So, because my body thinks it is helping me by storing all the energy and such from food it's up to me to control my own diet and exercise in order to guide my body in the right direction, almost like helping a child who has gotten something a bit wrong and needs some help, if you understand what I'm saying? That was very long winded ha. 

Once again, I thank everybody for reading this post and coming back to my blog, I hope if anybody is reading this with POMC or a child with POMC/LEPR or Prader Willi Syndrome recently diagnosed I hope I've helped a little.
xo. 











Tuesday, 12 September 2017

Getting and Coping with a Diagnosis - The POMC Series

Good day everybody!

How are you all doing today? Very good I hope. It's been a crazy hectic week what with York and a few other things going on at home, getting ready for university is so exciting and I've already got my backpack ready to go! Nothing like enthusiasm, eh? Anyway, I've been working on today's post for a while and I've actually had most of it written up for quite a few days now but it's something I've been meaning to discuss for some time; today I want to talk about getting and coping with a diagnosis of POMC or any other genetic obesity disease such as Prader-Willi or Leptin Receptor deficiency. 
When I was diagnosed I was so young that I honestly didn't understand what was wrong and to be honest didn't truly understand it up until this year when I actually started to look deeply into my condition; there was very little support around at that time as doctors knew less about it then than they do now, so hopefully what I'm writing now will eventually get to someone diagnosed with a genetic obesity condition and help them.
Image from Google

Getting a Diagnosis
Right, first of all I would like to talk about actually getting your diagnosis, when you first suspect something may be wrong genetically in terms of obesity, probably from recognising signs and symptoms (find a small list of them here INSERT PREV BLOG POST) you should speak to your GP about your concerns about your health. There is a good possibility that you'll be met with doubt and scrutiny from many doctors you speak to, particularly primary care doctors such as GPs as there is a huge stigma attached to obesity. One idea particularly is that obese people are unlikely to take responsibility for their own health problems, this is an incredibly ridiculous idea as although there may be some people who prefer to blame others' for their weight, there are also people who can take responsibility for their health and others who have no responsibility to take as it is no fault of their own. One way that you can help yourself here is by printing off a list of symptoms and signs that you are experiencing and take that to your GPs surgery, book a double appointment with an actually doctor as this gives you more time to explain your circumstances. If you're struggling to get support from your doctor the first time, ask for a second opinion if you are convinced there is an underlying issue. 
If you are determined and have an understanding doctor, or one who likes to take interest in unusual conditions, you may be given referrals for genetic testing, these tests can be intensive and arduous and very frustrating at times, most of mine consisted of blood tests, ECGs, I actually had treadmill tests, some kind of sleep test where I had a space helmet like contraption over my head whilst I slept and many others. Often these tests can be frightening especially if you're a child and don't fully understand your situation, they can be emotionally fraught times during and waiting for test results but if you speak to the team dealing with the tests it should be possible to arrange some sort of counselling session, as least my hospital did that for me when I was scared. In times like these it's also important to keep a close network of good friends and family around so you can talk to them when you need. 

Coping with a Diagnosis
If you are unfortunate enough to be diagnosed with a genetic obesity disease then I truly feel for you, the first thing that you need to know is that you are absolutely not alone, as much as you may feel it at the beginning. You may be angry and try to blame whoever you can for this happening but honestly, don't. In situations like this absolutely nothing can be helped as much as it may hurt, one of the best things about being diagnosed at a time like this is that currently there are trials going on to test a particular drug to see if that can help, there is more knowledge and more doctors researching it then ever before and there are more people diagnosed. Personally, knowing what I do now about the condition I would recommend doing several things once you are diagnosed, these being:
  • Learn - find out as much as you possible can about the condition you have, ask doctors, nurses and specialists what is involved with your condition, how does it affect people, learn about what foods are best for you, how you can exercise, how you can try to maintain your weight, learn as much as you possibly can about your condition as it will help in the future.
  • Take Note - take notes on how your body is progressing, is there anything that can make you worse e.g. do you find it hard to say no? Little self-control? Often times pressure and convenience can lead you to eat badly, if your friend tried to twist your arm for fast food, you must find out what your triggers are, how you can stop yourself eating badly and take notes on how your body is developing. Are you gaining, losing or maintaining your weight? How are your usual body functions e.g. how is your hunger, how are your menstrual cycles? Learn about yourself. 
  • Teach - it's essential that you teach the people around you exactly what going on with you the best you can, build up an informed and understanding support network around you as these people will be your biggest strength in your darkest of days. 
  • Get Support - as I mentioned earlier there are now a number of organisations and nonprofit organisations that have been established in recent years that can give or can point you in the direction of support. Facebook groups, blogs such as this, NORD, EURODIS, Orphan Drug Act, Genetic Alliance, Global Genes and so many more organisations can help and support you. Other groups such as Facebook groups are often much more for emotional support and helping you get in touch with doctors. 
  • Diet Changes - It's essential that you make some changes to your diet when you're diagnosed with a genetic obesity disease, especially if you've not had a great diet up until this point. Again, it's all in the learning, get yourself to a specialist dietician, preferably referred from your specialist doctor rather than a GP as GPs and your "average" doctors do not tend to read notes and it can make you feel as if you're banging your head against a brick wall. It'll take time but try and find a diet that includes all or a lot of the vitamins and nutrients your body needs while getting in the foods you love, get support from family and friends, do not let them push you into something you know is not good for you. Make better decisions when going out for food and try to be aware of your exercise as well as this can help a lot in making you feel better in yourself and in *some circumstances can help maintain weight. 
That ladies and gents is all of the information that I can give you from my little noggin. I really hope I've been able to help but the one piece of advice I can give you is this: give yourself a break, none of this is your fault and know you have a diagnosis and the knowledge of what exactly is going on in your body you can try to make some good changes and Rome wasn't built in a day remember. 
Thank you all for reading. Have a fab day! 
xo.